Thoughts on life, disability, and the power of connection.

We need to talk about this being Aidan’s Senior year of high school. This isn’t going to be a grief filled post about how I wish we were looking at colleges and preparing for him to leave. Nor is it going to be a sappy look how hard he’s worked and how much he’s accomplished kind of post. This is a post about how I’m either the best mother in the world or the worst....

It’s too early to be awake, really. The sky is still grey, blurring the landscape around me. The sun rises slowly perhaps in defiance of the demands of the day. It appears as a white patch smudged on the pastel blue sea. It’s midday and the sunlight dances on the water. Tiny sparkles bopping to rock-n-roll, classical, pop, whatever I choose to hear. It’s an invitation to dance and I do. It’s unreasonable joy,...

I have a lot of strong feelings and opinions about prom in general. I will spare you my soap box, but as I share pictures of Aidan’s prom I must share two thoughts. I knew prom was coming up this year and I purposely put it out of my mind. It was too emotional for me. Then I got a message from his teacher saying Aidan needs to go to prom. She was right and...

Aidan got his new wheels last week. His first power chair lasted all five years that it really needed to. Insurance doesn’t like to replace them more often than that. His was being held together by duct tape and had developed a suspicious grinding noise. Aidan’s new chair is similar to his old one but offers seating choices. It reclines, tilts and most importantly raises up to the height of his peers. We absolutely...

Let’s talk about the topic I’ve specifically been avoiding. Aidan, Liam, and the big departure. I know I will be both grieving AND excited when Liam goes to Bowdoin. This school is the right fit for him and he has so many grand adventures ahead. And yet, he’s a mini me and is the joy and laughter that fills this house. I’ll feel all the feelings and I’m good with that. But what about Aidan?...

We did it! We graduated a kid and we survived. Actually, Garreth and I did more than survive; we glittered joy on the entire big week. Listen, graduating a kid is no small thing. But add to that the dynamics of differing expectations, varying levels of emotional bandwith, logistical chaos, and, well, it’s a recipe for a mini disaster. Garreth and I excel in crisis situations (the sweet spot of our marriage is the hospital)...

This is it. The week leading up to Liam’s graduation. Full of celebration and anticipation. In truth, so far, it hasn’t been quite as hard as I expected. I know, I know. There’s no saying what the actual graduation ceremony will hold for me, but I thought the weeping and wailing and rocking in a corner would have started by now and it hasn’t. The school calls it Red Carpet Week as there are little...

For my Bowdoin bound boy in honor of Bowdoin One Day. ***** I hope you stay curious that your brainiac wheels keep turning, wondering, asking questions about the world around you and the topics before you that you spend hours with your nose in a book stretching your mind, and hours in conversation stretching it more. I hope you remember when you tank a test that your work ethic is more important than the letter on...

A few months ago I threw my back out. It was the kind of injury that left me screaming in pain, crying from frustration, moaning in agony, and constantly squirming looking for relief. I have never known pain like this. Every step was fire shooting through my leg. I left the couch only to use the bathroom and go to bed. Over two weeks, I was able to walk with less pain, but was still...

I’ve been wrestling with, fighting for, and wringing my hands over inclusion for a long time now. I have to share this one fabulous example of a great project that Aidan did in English class, dreamed up by his aide who believes in him and has high standards for his learning. Word Book What is it? Aidan chooses two or three words on his talker and his classmates write or draw in response. Here’s what...

Non-verbal. Non-ambulatory. Seizure disorder. Genetic mutation. Spinal fusion. All phrases used to describe my son. All true. All words I want to throw out like yesterday’s trash. My son Aidan has a rare genetic disorder and he’s pretty incredible. I know, I’m his mom and believing in him is my job….. Read the rest over at HealthiVibe